Intense world theory raises intense worries

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Intense effects: Although the intense world theory of autism is theoretical, the therapies it suggests are real and may be just as likely to do harm as good.

In the past few years, a new theory of autism —the ‘intense world theory,’ proposed by Henry and Kamila Markram1, 2 — has attracted much interest from the popular press. Two welcome features of the theory are that it promotes a more positive view of autism and that the Markrams base it on a biological understanding of the disorder.

It proposes that autism is the result of hyperfunctioning of neural circuitry, leading to both feats of talent and a state of over-arousal. Journalist Maia Szalavitz describes this theory at length in the new online magazine Matter.

Although we all yearn for an overarching theory of autism, and the idea is appealing, the theory has thus far received very little academic scrutiny. We know all too well the damage that can result when researchers prematurely release a hypothesis into the public domain — for instance, the unsubstantiated claims of a link between the measles, mumps and rubella vaccine and autism.

Our particular concern regarding the intense world theory centers on drastic suggested treatments forindividuals with autism, namely withdrawing stimulation during infancy. The Markrams do not merely hint at such interventions, but explicitly spell them out. Yet if the theory is incorrect, these treatments could be damaging. As studies of Romanian orphans have strikingly shown, insufficient stimulation and impoverished neuronal input in early development are damaging to children’s social, cognitive and emotional functioning3.

So we ask: Where has this intense world theory emerged from? Is it as positive as it purports to be, and what does it mean for autism?

Model rats:

The intense world theory is based on data from two experimental studies using the valproic acid (VPA) rat model of autism. Exposure to VPA, an epilepsy drug, during pregnancy results in reduced social interactions, increased repetitive behaviors and loss of cerebellar neurons in the rat pups.

The Markrams and their colleagues found that the amygdalae and medial prefrontal cortices of these rats are hyperreactive, hyperconnected and hyperplastic4, 5. Their brains show a change in the balance of excitatory and inhibitory nerve signals, and in the efficiency of communication between neurons, which may have significant behavioral effects.

“We know all too well the damage that can result when researchers prematurely release a hypothesis into the public domain.”

The Markrams extrapolated these findings to suggest the presence of increased activity in certain regions of the brains of humans with autism, leading to overactive perception, memory and attentional processes. These, they say, are hypercapabilities that all individuals with autism possess. These features manifest as extreme sensitivity to sensory stimuli, elevated fear and over-emotionality. The intense world theory suggests that to deal with this intensity, people with autism tend to shut down and withdraw from the world.

This idea of sensory overload in autism is not a new one, and indeed the American Psychiatric Association recently modified the diagnostic criteria for autism to include unusual sensory responses as a core feature. However, whereas the VPA rat model may demonstrate hypersensitivity, the human data are much less clear-cut.

In people with autism, sensory symptoms appear to vary wildly: from hypersensitivity (strong reactions to sounds, light and touch) to hyposensitivity (failure to orient to sounds, and low sensations of pain) and ‘sensory-seeking’ behaviors (a craving for intense sensory stimulation), as described in a 2005 review of almost 50 years of literature on sensory abnormalities in autism6 and a 2013 discussion of the issue7.

A unifying theory needs to account for all, not just some, observations. We urgently need an exploration of the behavioral features that accompany the neurobiological changes seen in the VPA rat model. Does the suggested hyperreactivity, hyperplasticity and hyperconnectivity lead to enhanced or reduced brain processing? There is currently no consensus on whether increased neural activity facilitates or hinders brain function8, 9.

Savant appeal:

For the autism community, one of the appeals of the theory is the way in which the Markrams criticize ‘deficit models’ of autism and promote autism as a set of enhanced abilities rather than as an impairment. When looking more closely at the intense world theory, however, the picture is not nearly as positive as the commentary suggests. The Markrams describe autism as a constant state of feeling “hungover and jetlagged” and say that it is characterized by extreme fear reactions.

Indeed, they frame all of the ‘capabilities’ as problematic symptoms that need to be tempered before an individual can function meaningfully and demonstrate enhanced abilities.By contrast, other models, such as the ‘enhanced perceptual functioning’ model, describe genuine skills and superior abilities seen in autism10, 11.

So how does the intense world theory affect autism treatment? In their publications, the researchers state that their claims “have to be substantiated in systematic and controlled experiments on human subjects” before others make any predictions regarding treatment2.

However, in contrast to this expressed caution, in the popular press the Markrams call for a dramatic change in the way that clinicians and researchers treat children with autism.

In one such interview they said, “In the early phase of the child’s life, repetition is a response to extreme fear. The autist perceives, feels and fears too much. Let them have their routines, no computers, television, no sharp colors, no surprises. It’s the opposite of what parents are told to do. We actually think if you could develop a filtered environment in the early phase of life you could end up with an incredible genius child without many of the sensory challenges.”

This is a worrying throwback to the days when researchersimplausibly linked parental inaction to autism severity. What’s more, this type of statement at once creates anxiety about having missed the window of opportunity, and unreasonably high expectations. We also note a concern raised by Ari Ne’eman, president of the Autistic Self Advocacy Network, that we should not link the worth of a child with autism to whether he or she has special abilities.

Until researchers have tested the theory appropriately, we urge caution. We need to verify this theory before it can shape our perception and treatment of autism. Once this is done, we may well find ourselves with an intensely interesting proposal. For now, we remain intensely worried.

Anna Remington is lecturer in cognitive science at the Centre for Research in Autism and Education at the Institute of Education in London. Uta Frith is emeritus professor of cognitive neuroscience at University College London.

I agree with the authors that the intense world hypothesis requires much more research and evidence in humans before it can considered a valid theory of autism.

However, I can say as an autistic person that its suggested sensory environments and parenting approaches were two of the most important factors that helped me grow up in a healthy happy way into a high-functioning autistic adult (and autism researcher).

However+1, lemme disagree with the Markrams about the role of repetition in autism. The repetitive behaviors are not necessarily responses to extreme fear. Instead, many of them are simply fun, and that’s why some of us do them.

Brenda

Ani,

Can you elaborate on the sensory environment and the parental approaches that were used with you? I am very interested in learning all that I can. Thank you.

Rose

Autistics have been compared to fairies and aliens, thought to be lacking in quintessential human qualities and empathy. To be compared to a Romanian orphan might be a step up!

One thing almost all theories of autism encompass is the autistic’s lack; one thing almost all therapies work towards is being “indistinguishable from their peers” and never “comfortable in their own skin”. A recent book by a mother, Liz Becker and “Autism and the World According to Matt” shows what tolerance, time, and kindness can do for a severely autistic son who graduated, academically, at the top of his class while still being classically autistic, and mostly non-verbal. He is 28 years old and while still having no semblance of “normal”, he is attempting to live on his own in a protected environment. He has always lived in a protected, accommodating environment. I think Dr. Markham is considering no more than accommodation of the autistic child’s needs, and while possibly not hitting the mark, I think he is moving thought in the right direction.

Temple Grandin noted her primary emotion was fear, and many autistics would agree that anxiety and fear are debilitating aspects of their disability. For a severely autistic child, the negative emotions, as well as the positive, seems to be magnified.Dr. Markham has no “proof”, but his theory deserves serious consideration.To throw the fear factor of “environmental deprivation” only serves to, once again, negate what the behavior of autistic children is trying to tell us.

George Greene

To be fair, the Makrams have said in an interview on WrongPlanet “This does not mean the environment must be impoverished, in fact it should be a rich and diverse environment, but presented in a gentle and predictable way. ” Maybe they jumped the gun on intruducing a new theory but it seems promising and provides a compelling direction for research.

Emma

I am horrified to think that this research would be accepted as providing ‘treatment’ for autism. I have Aspergers and I am a happy functioning adult with a family of my own and work…. I did not have the upbringing suggested, which is known to cause developmental delays in most children. Yes less stimuli may be a good thing, but which stimuli? is it the same for all people? there are other posiitve theories such as neurodiveristy!

Rose

Which stimuli? I think the kids could tell you. For many, it is sound.

Comparing a much founded/studied and open hypothesis to a fraud (measles, mumps and rubella vaccine and autism) is a terrible way to start an article.

I was looking for something related to “intense world theory” and saw this link but reading was painful.

I think you are very right about thinking treatment side of such theory but still to me science is about evolving an idea to next step and it is much about progress and I appreciate it when it is done in plain sight. I think it is responsibility of the media outlets, funding centers to handle such theories with great care and from resource rather than blame the source they didn’t confirm when things goes into wrong direction.

Back to “intense world theory” I don’t think there could be ever a unifying theory about autism since it is used for very broad spectrum. Yet it is very important for real scientist to try to come up with ideas which could shed light to other people.

gregboustead

Ali,

Without putting words into the authors’ mouths, I think the vaccine/autism reference was to highlight the potential pitfalls of broadly promoting any scientific idea with little supporting evidence – as a general cautionary note.

Please check back next week for a discussion post featuring alternative views on this topic from other researchers and clinicians in the field, as part of our “Cross Talk” series.

Please be sure that I respect people looking for opposite thoughts, however that must be even a finer work than creating/working hypothesizes and I’m sure you’ll do a great job.

Derrick

Being autistic myself, I don’t see any reason to be worried about the Intense World theory at all.

And since the article appears to be written by professionals in the field of neuroscience…what about actually getting their facts straight before posting? Citing the Romanian adoptee studies? Really? Basically, the Markrams are advocating a calm environment for autistic children. And the authors of the article are comparing this idea to a study about children who suffered from severe deprivation, malnutrition and sitting in their own feces all day?
Is that what you call serious journalism? Give me a break. Embarrassingly bad effort.

It’s also quite disappointing that the authors rely on eliciting negative emotions against the theory by overblowing concerns about oh so bad treatment consequences (without giving any real facts supporting their view) instead of making concrete arguments against the intense world concept.

Steph

I agree 100% with Derrick on this. As someone with an ASD and who is high functioning, I believe the Markrams are onto something and that their research will completely change the field. Of course, the Markrams predicted the issues that would be raised against their research and judging from this article they were right on. Also consider that a lot of money has gone into autism research and for a theory to arise that contradicts these past studies and seems to say that the experts have been going in the wrong direction…well of course they will argue against the Markrams theory, in this day and age money talks. No matter how on target The Intense World Theory is, it will be fought, too many egos are at stake. The fact that fear tactics are being used against this theory should be a big red flag. Pay close attention to this and let’s make sure that the Markrams do not suddenly and mysteriously vanish off the face of the earth.

Mary

I was diagnosed with Asperger’s at age 58. I studied cognitive neuroscience as an undergraduate. A scientific article doesn’t compare the loving, quiet environment proposed by the Markhmas to the deprivation of a Romanian orphan. It took me over a year to find the Intense World theory of autism, and for me, by far, it made much more sense than anything else I had read. I keep applying the insights from the article directly to my own life with good results. I look forward to the further postings about this. I raised a happy son, who is now 21 years old. I honestly do not know if he is on spectrum or not. He needed tremendous amounts of time alone when he was young, and was very visual. I gave him that time alone, and a rich environment in which to get to know himself. He wanted to manipulate things with his hands and I gave him many things, starting from a very young age. He wanted to be held a lot as an infant, and many of us contributed to be sure this was taken care of, when I was sometimes overwhelmed. He wanted to be attended to, listened to, and loved. I realize autism is a spectrum disorder and I would never propose to an autistic parent how to raise their child. I am simply reporting that the theory has been more applicable to my own life, since my diagnosis, than any other, and that I, in retrospect, had a child with many sensory issues which I respected and supported.

Dan

I think we should explore the theory, but on a broader scale than autism. To start with, I would define a human as “an ape-like creature that develops a model of the world in its brain, and upon physical maturity, moves its ego inside the model, avoiding the actual universe at all costs”.
Most people live in their own world, whether intense or not. NTs (neurotypicals) have a ‘full’ model, including layers of insulating emotional interactions and memories that protect them from stimuli. It is the completeness of these layers which enables active interfacing with other people. The spectrum of human interactive and communicative behaviors is both a physically qualitative function and a mental quantitative one. A person must have enough fully participatory physical neurons and a complete ‘shape’ of a model of the world in order to be considered “normal”, but there is no ‘perfect’. Some people will be socially normal and have hyperactive world areas of genius or motivation. In other words, the overall world model is dependent on physical brain functionality as well as environmental factors.
Sometimes, these overlap when various factors like diet, disease or stress affect physical or chemical balances, or trauma causes damage.
There are specific areas of the brain that might be more prevalent, but it is the overall ability to build a world model and maintain its integrity amid all of the other world models (insulation and communication balance) that can be said to envelop the range of neurodiversity. We are never going to make a perfect human, but we can see where not to screw them up. My short list is
abuse/bullying
food
pollution
ignorance

Sue

The Romanian orphanage comment is a bit much. I’m pretty sure the Markhmas meant something more akin to Stanley Greenspan’s Floortime approach where you tailor sensory stimulation specifically to the child so they are able to engage and attend and therefore climb the developmental ladder. A fantastic example of this is written in the book The Boy Who Loved Windows: Opening The Heart And Mind Of A Child Threatened With Autism.

Science “experts” depend on fear to keep their advantage over parents. How I wished I had never met an expert, and continued to trust my “mother’s intuition” like Christine Barnett. Time to take back our kids.

Neural circuits can be overloaded because of any of two reasons: hyperfunctioning or reduced bandwidth. The former is described by the “intense world” theory, the latter by the “long distance underconnectivity” theory. Both of them are valid, each for a different subset of the ASD population. I am aspie, and long distance underconnectivity explains each and all of my traits.

Patricia

How is providing a calm, safe, non-overloading (NOT-non stimulating environment) bad? For professionals who study autism, do you actually communicate with autistic adults who communicate very clearly about sensory overload and the issues it causes? Intense world theory does NOT promote “withdrawing stimulation during infancy” – rather, providing a sensory MANAGED environment which ALLOWS the child to be able to learn. If you are constantly overloaded, how can you learn? Honestly, as the mother of an autistic child, it bugs me to no end that supposed professionals don’t seem to take the time to actually look beyond their hallowed walls and actually get information FROM AUTISTIC people. You can guess and postulate all day long, but if you aren’t getting information from the source, your research is sorely lacking.

George Greene

I’m also the parent of a son on the spectrum. I think the fact that autists with such high intelligence can tell researchers what they are actually feeling would be a great advantage to research. Most of behavioral and social psychology is entirely dependent on “reports” from subjects. I see no reason to trust responses from autists any less (and perhaps more) than neurotypicals. I’ve seen no theory yet that explains as much as the Intense World theory; with autists themselves saying it’s spot on, that should spur others to replicate and expand this intriguing line of research.

Anonymous

They advocate for a calm, safe, and non-overloading environment with a tailored amount of just-right stimulation. They do not advocate for neglect. I imagine optimal treatment during the first 3 years would look something like The Boy Who Loved Windows (although this book is outdated in some ways). This baby had extreme sensitivities. An early intervention OT worked with the mother to both protect him and provide him with the just right stimulation he needed for his development. Our kids usually have a variety of sensitivities. Each child is different and needs different kinds of protection and different kinds of stimulation.

Mystery Guest

My whole life I have been very close to this issue, and though it’s not popular, I believe that unintentional neglect and lack of meaningful stimuli in very early life is a major contributor to the cause of autism and for the world being so intense for those with autism to begin with. Having extreme sensitivity and memory, repetitive behaviors, and overactive fear responses are survival techniques that work. When someone who’s entire life has been an all-out survival strategy, coping with normal stimuli and social subtleties is jarring for them in their heightened state of perception. From personal experience I suspect that what this article proposes as a treatment for an intense world is actually the cause. I am not blaming the mothers in any way, or saying that anything is wrong with autistic people, but we need to admit that this is a possibility without stigmatizing or blaming those who are most in need of help in order to move forward. I’m sorry if my view offends anybody, I’m only saying this because I think it’s true and an acknowledgement that this happens would have helped my family a lot.

Joy

I am an education advisor, whoe works to help teachers accomodate autistic students who are mainstreamed in their classes. The over whelming number of the students I see suffer from high levels of anxiety/stress/fear from the sensory overload of the average classroom, which then spills out into difficult behaviour. This theory resonates with me, and I like it’s de-emphasis of the idea that people with autism lack Theory of Mind and empathy. I agree that most autistic students I meet have a high level of empathy, which they do not know how to handle or express. However, I think we should be cautious about seeking a unifying theory. Autism is a complex condition which presents in many different ways. We need to value all individuals for our differences as well as our universal similarities.

Shelly

I am a 34 year old highly functioning autistic. I have always been extremely intelligent, won many spelling bees, wrote novels starting at a very young age, and was in the gifted & talented class. As a kid, I had a lot of trouble with coping with the stresses of the world around me. I would rock back and forth at school. I would bang my head on my pillow at night to go to sleep. What made me feel better was hiding in my closet behind my bookcase where no one knew where I was. Nothing could bother me there. This sensory overload theory makes a lot of sense to me. I am now married with 2 kids. If my husband and I get in a fight I will go in the bathroom, lock the door and run the bathwater and the fan. The noise drowns everything else out. After I have a hot bath I feel better. Sometimes when things feel overwhelming with work and family I get a weird urge to run away. To just get in the car and drive far away where no one knows where I am for a while. I have never done this but I believe it goes along with this theory. My senses are overloaded and I’m just wanting to escape from everything.

Shelly

Also I forgot to mention that when I was growing up I was so extremely shy & introverted that I would very often go all day without talking to the other kids in class. It never really bothered me that I didn’t have friends. I felt that I didn’t need anyone to be happy. I was pretty much in my own little world. I didn’t really have friends until college. I also didn’t date until college even though I was a model and did runway shows. I felt so insecure with myself until college. It wasn’t that I wasn’t empathetic towards people, I just didn’t know how to have normal relationships. Still to this day I struggle with maintaining relationships beyond my immediate family. The drama that comes along with friends is overwhelming to me. Friendship seems like a lot of work that just isn’t worth it to me when I have important projects & things I’m working on that I focus my time on. I have a lot of acquaintances but no really close friends. Hopefully others with high functioning autism can relate or those related to someone with autism will gain some insight into the mind of someone with autism.

John Slegers

I don’t really see how this article challenges “Intense World Theory”. All the data that I’ve seen so far describes Autism as the lack of a subconscious filter between our conscious selves and our environment, while interacting with that environment. The logical implication is that the perception of Autistic people is far more intense than that of Neurotypicals.

I have Asperger’s myself and I’ve met quite a few others who have some form of Autism. ALL of us experience the world around us much more intensely than “normal” people, due to a lack of subconscious filters that process information between our conscious selves and our environment, while interacting with that environment.

The huge differences between “high functioning” and “low functioning” forms of Autism can easily be explained by the co-morbidity to ADD, OCD and other conditions, which can either increase or reduce the harmful influence of Autism on the individual.

ADD is usually a positive influence and makes it more likely for an individual to be “high functioning”. It allows one to handle intense input 24/24 and 7/7 much more easily than others and sometimes makes the Autistic individual insensitive to sensory overstimulation. Some Savants even tend to experience sensory under-stimulation and find chaotic visuals or sounds relaxing, with minimal impact on the severity of many other Autistic traits.

And then there’s also personality. Willpower, intelligence, endurance and degree of extravertedness can all play a role in one’s capacity to overcome the difficulties that come with Autism.

Last but not least, there’s also environment. Autistic people have different sensitivities and the way an individual interacts with his environment impacts the severely of one’s symptoms. Especially during the early stage of one’s personal development, threatening environments typically have a strong negative impact on an individual’s development while comfort and security typically have a strong positive impact on an individual’s development.

What makes this even more complicated is that whatever is threatening of comforting is often different at an individual level. For example, extraverted people often feel most comfortable when interacting with other humans while introverted people tend to feel most comfortable in isolation.

Knowing all this, it should be dead obvious that there is no one therapy solution that can work for all people with Autism and different cases with Autism require individual treatment based on parameters specific to that individual. This will remain true in the future, no matter how well we will understand Autism by then.

Michael

I haven’t seen any recent research that conflicts with intense world theory. The VPA rat model relies on a teratogenic effect during neural tube closure to initiate the autistic syndrome. It was recently reported that an inflammatory reaction during prenatal development can cause autism, as well. What we don’t know is that how a teratogen can chance DNA to prevent the post birth synaptic pruning from being normally completed.

I have Asperger’s. Intense World Theory has helped me more than years of medications and therapies (I use neither). By understanding that too much bottom-up sensory input interferes with top-down executive functions, I’ve managed to compensate by using devices to reduce background noises, lights, and other kinds of unwanted environmental stimulation.

An Asperger reply

It is not about “withdrawing stimulation during infancy”, it is about creating an calm and quiet environment without all noisy perturbations which affect people with autism. In this quiet environment stimulations are welcome.

Frede

Please forgive my less than fluent English as i am no native writer.
But I keep tinking about the studies of romanian orphanages. Indeed, how would a baby with a potential to be high perceptive and high empathetic grow up in an environment like this? Feeling (but not yet understanding) the suffering (hunger, ache, loneliness) of its peers. Feeling the neglect and hardened hearts of the so called caretakers. Applying the Intense World Theory, it would shy away mentally an close up into itself. Becoming exactly autistic.

Lila

Apart from making people with autism feel better about themselves, why on earth should it be treated – it’s not an illness, for goodness’s sake! What’s needed is understanding and acceptance, not some misguided ‘cure’. As some one with Aspergers myself, the last thing I want is attempts the render me ‘normal’. I LIKE being me, and always have. The only problems I’ve had with my Asperger’s are 100% due to lack of understanding and acceptance by so-called normal people.

mosaicofminds

I agree with the other commenters, there’s a big gap between reducing children’s exposure to loud noises, crowds or smelly perfumes and raising them in utter deprivation like the Romanian orphanages. How much stimulation is the right amount *is* the question we need to ask, and *does* need to be tested. It would be nice to get more details from the Markrams on this. I guess you could argue that the Markrams are jumping the gun in their public statements because they haven’t directly tested this hypotheses in humans yet, but in that respect they seem like many other autism researchers.

I note with amusement that you raise concerns about the Markrams “creat[ing] anxiety about having missed the window of opportunity, and unreasonably high expectations.” I fail to see how this is any worse than the mantra of early intervention researchers that some sort of “window of opportunity” for learning closes if a child is not diagnosed and enrolled in early intervention by age six. Certainly, this “magic window” idea places undue stress on parents, and the age ranges seem to be based on a typical developmental timetable rather than an autistic once. The Markrams at least do not set a specific, possibly unrealistic timetable.

This piece sounds more defensive than convincing, honestly. The authors of this opinion piece are proponents of social cognitive and weak central coherence theories of autism that work like the Markrams’ seeks to displace. Perhaps that is a reason for the authors’ “intense worries.”

Michael

Just for discloser, I am autistic. I read the Intense World Theory for the first time when I was 31. By 33, I had read it multiple times and written a few essays on it. The understanding of autism as a sensory-disorder changed my world in so many positive ways. I decided to go into psychology and focused on studying the neurophysiology of autism. So yes, I have this bias, and what I write is personal. I have since learned techniques to reduce the sensory overload and this helps me function in ways I could have never done before. If you read the theory a few times, you will understand the suggestions to limit sensory stimulation to autistic babies. Recall the studies were cats were reared in environments without horizontal lines and thus, the cats were not able to process horizontal visual information. The authors of IWT suggest that the hyper-plasticity of the autistic brain is triggered by environmental stimulation. Reduce the stimulation to reduce the synaptic over growth. If you’re not autistic, our world is like this: overhead ceiling lights can feel like the sun. The sound of someone typing on a keyboard can be like sitting next to a drum set being played. The smell of banquet can make you feel like you buried in rotting flesh.

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